He may advocate that everyone be scanned but I hope that others are more pragmatic and practical than he was before rushing off for such an invasive procedure. I think we need to be sure that there is research undertaken to substantiate this approach in disease management. We need to make sure that we're on the right track in pursuing this, especially when people are making money off of us and people are taking such big risks with their health.
I have learned that I prefer to rely on unbiased evidence of an ACTUAL connection between the treatment and its impact on the disease than on "gut feeling" or anything else. It's just too easy to bamboozle or confuse us with medical jargon when we're really not adequately trained to truly understand the technicalities of what's going on and assess it scientifically ourselves.
That's just how I've come to feel after many many disappointments over the years and a much lighter wallet. I just know that it's too easy to appeal to my "common sense" when I really don't have the expertise or technical capabilities to really understand what I need to in order to properly evaluate what's being presented to me.
The MS patient population is far too big for all of us to insist on treatment right now. There just aren't enough facilities and trained doctors to handle the volume. So isn't it perfect that some will pioneer this concept and be treated early while others choose to wait for more evidence?
It's frustrating that there isn't any collection of standardized patient post-op reports. There are some postings of wonderful results, but it's hard to draw broader conclusion from them. I assume one benefit of these international studies will be a more scientific quantification of the results of treatment.
For example, will PPMS and SPMS patients benefit less because their disability was greater? Or is the location/size of the blockage(s) what determines the degree of disability?
With so many studies being done, hopefully, we will have answers sooner rather than later, and much more quickly than the years it normally takes to do a study of a new drug.
This already seems to be the case, both anecdotally and in Zamboni's endovascular treatment study. (I agree that replication is necessary.)Rosegirl wrote:For example, will PPMS and SPMS patients benefit less because their disability was greater?
There is that distinction between symptoms due to CCSVI (that are gone after the CCSVI treatment) and symptoms due to neurological damage (that are still present after CCSVI treatment but, with the conditions that caused the damage now gone, now with some possibility of healing.)
CCSVI treatment cures only CCSVI. MS damage will need to heal itself (more possible in the brain than the spinal cord) or get helped along by stem cells or other neuroregenerative treatments on the horizon.